"So are you concerned about this-the oral stimming, the mouthing of objects-do you want therapists to get him to stop?" "Well, yes I am concerned about it because he's putting things in his mouth that aren't healthy or safe like batteries/charging cables/my rings/his clothing...but I don't want him to stop stimming, no-I don't want him to stop doing something that helps him find comfort and process stimuli (internal or external). I'd much rather focus on helping him find safe things he can chew or mouth on, you know? Like chewy tubes, or some kind of fidget that can help him get the input he's seeking orally. But I don't think this particular stim is one we should work on getting rid of. No."
I spent 2 hours in a room doing this-advocating for my kid, talking, explaining, objectively and constructively fleshing out as accurate of a picture of him, his needs/strengths/abilities/struggles as I could for the intake therapist at Easter Seals. Just like I did last week for an hour with the speech therapist, last month with the team at Kaiser's Autism Center in San Jose during his assessments, and as I've done repeatedly for the last 3 years for Alex. It's a weird balance trying to maintain when you're working to get your kid the help he needs while also making it clear that he is not "broken". It's pushing back at the subtle and overt messaging that there are parts of your kids that need to be fixed by asserting instead that perhaps what needs "fixing" are the classifications of certain behaviors as "typical" (i.e. "good") + a world that isn't inclusive of difference that exists outside of narrow parameters. It's choking back whatever worries/anxieties/fears you have as their parent and steadying your voice so you come across as concerned but informed/proactive/capable. It's ignoring the surprise that starts in their eyes and spreads across their face, alters their body language, and shifts their tone and warmth toward you once they realize the Black woman sitting across from them can talk about things like language development, the vestibular system, primitive reflexes, sensory integration, and varying behavior modalities on a "professional" level. It's verbally adding nuance to the questions that can't be answered with a simple "yes/no/sometimes" or the 2 lines they give you to "explain further". It's smiling and relishing in the moments in between answers when you can elaborate on who your kid really is in spite of what's in the reports and diagnoses.
I've done it so much for all 3 of my kids over the last 3 years I've learned how to talk about them/their needs/their struggles as their mother and advocate simultaneously. I've learned how to detach emotionally and be objective and firm. I've learned to remember what's been said in every evaluation/appointment/therapy session. I've yet to learn how to keep it from exhausting me though. I'm hoping they learn from watching and hearing me do it how to do it for themselves as they grow and navigate the world on their own.
It's what I wasn't taught how to do by my own parents. Isn't that the goal, ultimately? To do for the next generation what couldn't be done for your own, so that each one becomes more equipped to navigate life and better themselves and world? That's the work we've been asked to do isn't it? It's exhausting work but I choose to believe it's worth it. I do.